APS positive since 2008 & SLE & Discoid Lupus. In DIscoid Flare now. Still no treatment 4 Hughes - most debilitating of all. Am I alone ?

Hughes can be traced back to 5 miscarriages (20+ weeks) & stillbirth @ 32 weeks approx. Blessed with girl before & boy prior to a Hysterectony at 27. This was due to fibroids and constant periods , 1988. Heart Attack caused by infection in the pluera (sack around heart was twice the size filled with fluid & infection ), in 1998. Otherwise very fit. Only slept 4-5 hours a night. Always worked at Senior levels & thrived on stress. Lived in USA for 10 years moving back to the UK in mid 2000. Working again within a week - again Management positions, found a family home, Container arrived from States. OCD re house & Garden, home cooking etc so constantly on the go. End of 2002 had flu like symptoms for a week & ended up hospitalised, paralysed from waiste down for nearly 3 months. Outcome. Was dropped from a hoist damaging my back but refused to report officially as the stroke ward I was on was so short staffed. Only 2 staff on duty @ night. But Dr's final opinion was nothing wrong with me but stress.

We all know that one. Was left with paralysed lower L leg.

Things seemed to improve by will power but exhaustion would put me in bed & I had chronic pain from the back injury. GP told my family it was all in my mind & Husband left me after being together for over 27 years.

Alone & helpless I tried to kill myself. I was found unfortunately & then my X's family rejected me totally. I knew no one in the area. Except him & his family.

I now feel the same as I did then. Ten years ago. I just want to end it all.

I am 51. Unable to work. A burden on Society because I receive benefits & I also have female carers twice a day to help with my personal needs etc.

My old GP was brilliant but was involved in a crash where a lady with dementia walked out in front of him. Poor mzn is in prison & his locum has taken over. He says my case is too complicated & one of my local Consultants has written 4 times askjng for him to make a referal but he just doesn't do it. I don't havs the energy to find a new GP...

For 10 weeks this year with the help of my carers and a goal plan my local Consultants helped me set-up..even with motivational pictures around my flat I managed to go from being bedbound to getting up & dressed every other day & even managed to get out in my wheelchair. Each time a little further. Even managed a trip to the shops & a few charity stores. Then massive migraine attacks hit. Imigram injections didnt help so I ended up in A & E 4 times where IV cocktails worked. However after getting home @ 4am my personal carer that day was turned away & my care stopped as they thought I had been an inpatient. It oo 8 weeks of fighting to get my care reinstated. Apparently no yearly reviews had been completed by Social Services & Care Companies had changed on April 1st & all their paperwork was incorrect. No care plans etc. I had made the mistake of BCC the QCC in my letters to the Care Company & Social Services.

Don't make the same mistake as me.

Finally I got my cate reinstated but ghe stress resulted in the worst outbreak of Discoid Lupus yet. My arms & Legs are covered in large chicken pox typd leisions that are pussy & constantly bleed where the tops stick to the cotton bedding & night clothes. They are perfectly round but I m sure they are now infected.

All was not lost as I had an appt at StThomas' Lupus Unit. But as usual yet another Dr I have never met. I had to pay to stay in a hotel with my full time male carer as the round trip takes 6 hrs plus due to hitting rush hour traffic either in the am or pm.

The DR was good & concerned about several issues. I now go back for a test on the 30 & another on 31 next week. But the next appt made for Jan has been postponed until the end of April (magical 6 months when staff move on). The letter arrived 2 days ago. The Hospitsl already missed thr fact I had no Vit D since 2008. The last Dr I saw looked up my results when I asked but surpruse he no longer works their. So 6 months ago I started getting IM Vit D shots & the test onthe 30th is a bone density scan to see how much damage has been done with no Vit D, B12 etc for 4 years.

What is the point of going on. I feel like I am in the same place I was in 2002/2003. Plus the freeze type fits I am having are becoming worse. Yesterday I couldnt find words, speak properly etc & wondeted if it was a stroke. Obviously not as tgis morning am back to normal. In agony. Exhausted. Useless. Drs not listening or being over ridden by their boss.

Any reason to live ? Would help government deficit if I wasn't around.

16 Replies

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  • Hi there, I am not at all surprised you are stressed, and I will also say to you, a big welcome at this point. You are not the first person to have arrived on here, at the very end of their tether. An action plan I would suggest is first of all, whether you like the GP or not, (or perhaps see somebody else in the practice or even demand politely a home visit, please do this. It is vital you tell them how depressed you are. Also it would help to get back in touch with the LAST consultant you saw at St Thomas', you can do this by ringing up their secretary, see if you can get an email address to write to, so you can write a summary of how you are feeling and what is going on. They should also have a nurse there that you could talk to in an emergency. Countless times I have had to put things in writing in this style to shift blocks. You will have plenty of support on here, but in the first instance you must get help for your depression and any infections, that is the first step..and hopefully another urgent appointment, where you can, when feeling a little better clearly explain your dilemma with your carer present, and also get very clear guidelines for your local rheumatology department. Lots of people will also try and help beyond myself. All the best Mary F x

  • Hello Fiona, First of all and most importantly a very warm welcome to you. You will find lots of support and help here on this friendly site.

    In answer to your last question...of course there is a reason to carry on. We have all felt like this, low, depressed and at the end of our tether but we must not give up and nor should you. Everyone is a worthwhile human being, so its time that we started to kick some butt in order to help you get back some control in your life.

    As Mary says the most immediate things are that you need to sort out your depressed mood and any infection that you might have. Please call your GP and insist that you have an emergency appointment. Tell them you have infected sores and you need treatment.

    Do you have carers coming in? Can they call the GP for you and arrange this?

    When that has been done you should again do as Mary says and call St Thomas and ask for a emergency appointment with them. Explain that you are in flare and need treatment.

    When your immediate crisis is over and you feel more like coping with it, if you feel your medical needs are not being met you could make an appointment to see your MP. he/she will have more clout in speaking to the people locally to make sure that knuckles are wrapped and that you are prepared to speak up if you dont get the care that you need.

    I know this is all hard and seems overwhelming at the moment but we are all here for you and will support you as much as we can. So hang on in there and Im sure more people will be along to say Hi very soon. x

    BTW the forum is suffering today with very bad technical problems so the emails are not getting through and its running very slow but it will sort itself out soon. :-)

  • Hi Fiona

    Welcome and glad you found us! You are not alone, if we can help we will!!

    I'm sorry you are feeling so down, not surprising with all the stress and pressure on top of feeling so I'll.

    Please, please talk to carer, go to gp, tell them how low you are feeling and about skin, possible infection. You really need to share hon!

    Copy what you've written above and take to St Thomas's, so they know how you're feeling too.

    You sound so desperate, wish I could give you a hug, sending cyber hugs instead ((((())))))

    Please keep in touch and let us know how you're doing hon, you are worthwhile and do matter!!!

    Take care, gentle hugs love Sheena xxxxxx :-) :-) :-)

  • I Was at the Lupus Centre at St Thomas' last week. They saw my discoid flare but just gave me cortisone cream. I was then told that priority was a bone density scan & a renal ultrasound. Plus the usual bloods. An appointment was made to return early feb. I arrived home to 3 letters all from St Thomas'. Firstly my appt has been put back until late April (yet another 6 months so yet again a new Doctor). One appt for Tuesday for the Bone Density Scan @ 2pm & one appt for wednesday at 3:00pm for the tenal ultra sound. I have hardly bren out of bed this year. I left St Thomas' last week afyer blood tests @ 2:30. We did not get me home until 7:45 due to traffic. My carer has been on the phone all day to Tommy's. The appt stays as is. PALS is already investigating why my lack of Vit D since 2008 went unnoticed. Not instigated by myself but by the Dr I saw 6 months ago who actually looked up my blood results when I asked. He no longer works in the Lupus Centre. We only discoveted that PALS is investigating when my carer called them today for help.

    My GP has ignored 4 letters from my local rheumi and he has also spoken to Tommy's today. He has managed to get them to book investigations into pr bleeding ASAP but the Top Professor insists that appts can not be closer than 6 monthd. The Dr. I saw last week at The Lupus unit did suggest that if I had another fit then any A & E would have to admit me...

    I had to use my savings to stay in a hotel last week as my appt was @ 9:30 am. I jad to attend in my nightdress which was covered in blood & puss spots from whete my leisions had caught. My main carer is a man & he turns me every 2 hours at night and monitors my c-pac machine but he is like a father and I have female personal carers. We have tried to change my GP but all local ones seem to have full books.

    I have been on the site many times & have answered quite a few questions especially on the Lupus one.

    I thought I was so lucky to be under St Thomas' Lupus unit but I fear they have too many patients.

    I really appreciate the hugs but I can't see how I can cope with 2 tests on 2 days booked within a week (which suggests urgency) but no follow up until next April. Also the Dr showed me my jaw was being eaten away ( I have no fillings & the dentist visits me at home every 9 months ) yet nothing is being done about that. It is the Hughes that is exhausting me yet I am only on meds for Lupus. As for depression. Two weeks ago my carer called the local mental health Crisis Team. They may be able to see me in June. Unless I Say I Will Kill myself. Then I will be admitted to the local hospital. There used to be a wonderful Mental Health centre "Runwell" I volunteered there back in the 1980's. It was closed down for new housing. It had beautiful grounds etc. The replacement is an old ward @ Basildon Hospital and of course no smoking. Stressed & depressed patients often rely on being able to snoke. I can not imagine what a ward is compared to the buildings, grounds, chapel & shop that were available at Runwell.

    For what I cost in benefits, medications & personal care it seems the NHS could really use that money for better things.

    Sorry all to be so gloomy. But I have been fighting. I can not get my pain levels below 6 now. II refuse more opiates & I have no muscles left. I raised my children. Worked hard all my life. But now I am just a burden.

  • I am sorry that things feel so difficult. I am really pleased to hear that your carer is on the case and liaising with PALS.. hopefully if you do the tests and your carer stays on the ball something will come from that. Meanwhile some imput from your MP, they do, do home visits. You need some more help to fight your corner. This MP involvment would make the PCT improve your GP care. You are no burden, you are burdened by health problems, we need to try and empower you to improve your lot. He sounds like a great ally your carer! Mary F x

  • Hi Fiona,

    You are not alone you have us all here and I agree with Mary try you mp and we all gone through what your feel and light will be at the end of the tunnel

  • Hi Fiona, please don't feel so alone with any of this,we will be here for you to talk to & to ask any questions, we all know how you feel with a lot of it .....I just want you to know we understand how you feel ,please keep fighting & keep strong, I want to be there for you as I know you would be if I needed you so I am here as the others are for you, we are one big family on here & we mean a lot to each other.

    I wish you wernt going through all this added stress too, we all feel your pain, you are not a burden to others, or the system, you just need support to see you through this,there will be light at the end of the tunnel,stay positive,I understand how difficult all this must be for you but some help will come your wayto help you through this, you are now part of our family & we care.

    Massive hugs being sent your way, you are not alone xx

  • Hi Fiona

    How you doing today? I know sites a bit slow at the moment and I'm not always around, just wondered if you ok??

    Take care gentle hugs love Sheena xxxxxxx

  • TY ALL WHO HAVE CONTACTED ME & MOST IMPORTANTLY SUPPORTING MY CARER. A BIG HUG TO YOU SUZYPAWS.

    BACK UP TO ST THOMAS' FOR TESTS ON TUE & WED AFTERNOONS. AS THE ROUND TRIP CAN BE UP TO 6 HRS WITH TRAFFIC WILL STAY IN TOWN AS TOO EXHAUSTING. BUT CAN ALSO SIT ON PALS AT THE SAME TIME. THEY ARE INVESTIGATING WHY NO ONE REVIEWED MY BLOOD TESTS FROM 2008-2011. THIS WAS INSTIGATED BY A DR KK WHO NOW NO LONGER WORKS AT THE LUPUS CENTRE. I HAVE SPOKEN TO THEM 4 TIMES NOW & THE INVESTIGATION HAS BEEN CONFIRMED BUT NO ONE EVER CALLS ME BACK AS THEY PROMISE. SO BEFORE MY TESTS ETC I & MY CARER CAN SIT IN THIER OFFICE & HOPEFULLY GET THAT ? AS A TOOL TO GET HELP WITH MOVING MY NEXT APPT CHANGED

    BACK TO THE ORIGINAL DATE IN EARLY FEBRUARY. AT LEAST THE TEST RESULTS WILL BE UP TO DATE. THE CONSULTANT I SAW WAS REFERRING TO AN MRI THAT WAS DONE IN 2001 ??? I THINK THINGS COULD POSSIBLY HAVE CHANGED SINCE THEN.

    ONCE I AM BACK FROM ST THOMAS' I AM DEFINATELY GOING TO TAKE YOUR ADVISE VIA MY CARER, AND ASK FOR MY MP TO VISIT. YOU ARE ALL RIGHT. I MUST FIGHT. IF NOT FOR ME BUT FOR ALL OF US AND THOSE POOR PEOPLE THAT STILL HAVE GONE UNDIAGNOSED.

    I USED TO ANSWER A LOT OF QUESTIONS ON THE SISTER LUPUS SITE....

    TIME TO FOLLOW MY OWN ADVISE. CHIN UP & LIVE TO FIGHT ANOTHER DAY.

    AGAIN TY ALL SO MUCH FOR YOUR SUPPORT. HOPEFULLY I WILL HAVE SOME POSITIVE NEWS AFTER MY SIT-IN BETWEEN TESTS.

    HUGS ( GENTLE ONES) TO YOU ALL.

  • Thank you for getting back to us x

    I'm glad to hear you are sounding more positive, your carer does sound like someone very supporting, .

    I wish you all the best to your tests & appointments coming up, please keep us informed.

    Keep your fight going, we all understand how you are feeling, we are here if you need to chat again, or need advise or just somewhere to vent.

    Take care of yourself, Sue x

  • Hi Fiona,

    had a crazy busy day. So sorry for not being around to see how you going on. So glad you feeling a little more upbeat and positive. Very pleased the fighting spirit is still their.

    Good luck with appointments, let us know how you get on.

    Take care gentle hugs love sheena xxxxxx :-) :-) :-)

  • TY AGAIN ALL.

    JUST A QUICK NOTE. I WON'T BE HOLDING A "SIT-IN" @ THE LUPUS CENTRE & / OR PALS. BUT A " LAYING-DOWN " PROTEST / HELP ME....AS AFTER 3-4 HOURS IN MY WHEELCHAIR MY LEGS BLOAT THEN TURN BLUE & I LOCK UP. TAKING A PILLOW !!!

    GENTLE HUGS TO YOU ALL.

    ..

  • Hi Fiona, well it sounds very sensible to take a pillow if you need to wait that long! Hopefully they wont take that long to deal with your issues.

    From my experience you can speak to the person on the front desk who makes the appointments, then if they can't re-schedule you, ask politely but firmly to speak to somebody who is authorised to change it and bring it forward. With a bit of luck they will get one of the Doctors on the unit out to ok it and it should not take too long and save you the bother of having to go and speak with PALS.

    If they get the message that you are not going anywhere until its sorted they are usually not going to risk a fuss so its the sweet smile through gritted teeth action first and then see where that heads....Good Luck and keep us informed. x

  • Good luck with it all, I hope you get to see someone quickly, I agree with the above....smile through the strained smile & see how it goes first..........hopefully the after business wont be needed.................

    Keep us up dated, hope you are listened to, if not talk to Andrew again too, he sounds like a trusty carer that will back you up where need be :) x

  • Once again TY all. Am definately being tested here. The dreaded letter regarding Assesment. Under the new benefit changes arrived. Surprised as my last name starts with a W...oh well telephoned as it was sent on the 25th & stated they would be calling for an initial telephone interview. So I called. Thought as I am normally bed-bound if not house-bound & was back up in London for tests a no reply wouldn't look too good. The lady was lovely ( me thinks wolf in sheeps clothing). Apparently DLA is safe. But I will receive forms within next 2 weeks which have to be returned within 28 days. Then I will have to attend Health Assessment & Also an interview @ the Job Centre. Failure to comply with any of the above will result in all other benefits being stopped. Just the added stress I need....Also just heard about Child Benefit being stopped for some too. That & The Utility Companies being forced to stop "Social" & "Essential" Tarrifs such as British Gas/Electric had almost feels like back door starvation policies to starve the elderly & vulnerable. My Electic is actually going up by 21%.....not just the 6% The government has imposed.

    Yet another fight & educating process regarding Hughes Syndrome & Lupus.

    Anyone know how long these forms are ??

    Oh well bring it all on.....more stress, so helpful...NOT... :-(

    Gentle Hugs All.

    Oh, does anyone know a good GP in the Shoebury SS3 Area ? Or the best way to find one ?

    TY all.

    N.B. The Louise Cootes Lupus Unit is now " The Rheumatology & Lupus Unit " @ St Thomas' University Hospital, London.

    That explains all the missing Hughes Syndrome. & Lupus Leaflets 2 weeks ago, having been replaced by leaflets about Rhematology.

    Also the Dr I saw on the 16th of October only works 1 Tuesday a month !

    Now I understand why the follow-up appointment has been put back nearly 3 months.

    Will keep you posted.

    More gentle Hugs All. X

  • Oh AP. I have fo see PALS as the Dr I saw at the Lupus Unit @ St Thomas' in April 2012 started an internal investigation as to why no Dr (& I asked for results on each visit), had picked up that I had NO VITAMIN D SINCE TESTING FROM 2008 - NOVEMBER 2011 X

    !.

    That Dr no longer works @ the unit. He. wrote & requested my GP to give me monthly 300,000 units of Vitamin D monthly IM ( I have obsortion problems via tummy), I have only had one injection & that was in May 2012 - one of the reasons I want/need to change my GP.

    The Dr I saw on the 16th October 2012 did not even request Vitamin D or B12 levels in my blood tests.

    Think this explains my depression & suicidal thoughts.

    PALS have told me they need a Managers Permission to update what the internal review has concluded or if the matter has been dropped. As this concerns me I feel I need to follow-up. Every appointment I would ask about my blood test results.....only one DR noticed the flagged Vitamin D levels & He printed off 20 reports for me. All showing No Vitamin D.

    I really do not want to be forced into going down the formal complaints road. Afterall PALS is meant to help & avoid costly complaint issues. But no Vitamin D since 2008 - October 2012 except for 1 IM injection of 300,000 units..I am really concerned about my bone density scan test this week. As apart from 9 weeks I have been bed-bound in a darkened room (due to severe photosensitivity), for nearlly 3 years.

    Gentle Hugs. Fiona

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